A five-year-old Kent girl is taking on a 6.8 km scooter challenge to help raise funds for a Yalding boy with a rare genetic condition.

Rosie Ioannou, who lives at Holborough Lakes with her mum Michelle and dad Nick, has met Sid Cooke, also five, at several birthday parties.

Michelle said: ‘Sid is a wheelchair-user and Rosie had some questions around that. We explained to her that he has a condition which means that he can’t walk well, and that his family is raising funds to help adapt his home to make it easier for all of them.

‘Then we were renovating her bedroom and she was choosing colours and patterns, and actually became quite emotional about the fact that she could access her lovely new bedroom easily and Sid couldn’t get to his in the same way. She said she wanted to help raise some money and initially I struggled to think what she could do, after all, she is only five!

‘So we came up with the idea of a lap of Leybourne Lakes Country Park – 6.8 km – in her favourite princess dress. She’s never been all the way round before, except when she was in a buggy when she was smaller, but we’re confident she can do it!

‘People have been so generous – she’s already smashed her fundraising target of £2000 to raise more than £3000 and we are delighted – every penny gets Sid closer to the house adaptations he and his family so desperately need. We haven’t fixed an exact date for her challenge, we’re giving people more time to donate and also keeping an eye on the weather, to pick a day when it’s not too hot!’

Sid Cooke, 5, was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – as a baby when it was discovered he had SMA1. Little Mix singer Jesy Nelson’s twins have recently been diagnosed with the same condition. Before this drug was made available, children with this disorder typically survived less than two years.

There is still no cure for SMA, but drugs and therapies help manage the condition and improve strength and flexibility. However, most therapies and much of the equipment needed is not available on the NHS, and families have to privately fund to cover what is needed so fundraising is inevitable for most families in this circumstance, given the extent of therapies needed is very expensive.

Sidney’s mum Sophie, 37, said: ‘Currently we are trying to fundraise for house adaptions. We need to create a through-floor lift for Sid, but because they are so big, we need to build an extension to create an accessible bedroom and bathroom too. He’s a big boy for his age, and that combined with low muscle tone means that carrying him around the house has become dangerous, particularly going up and down stairs.

‘He’s 25 kilos and 110cm, so it’s not like lifting a kettlebell at the gym – it’s much more difficult than that – risky both for us, his parents, and for Sid. There have been multiple times when we’ve nearly dropped him. And last year he broke his arm just falling off the toilet. We’re at a point now where we’re desperate to make our home accessible to him, but obviously that comes with a huge price tag – £120,000 for the building work, then around £18,000 for the lift itself.

‘We do our best but it’s becoming more and more of a struggle for me and his Dad, Aden – we have both slipped discs in our backs and Aden is awaiting an MRI.

‘Every day which passes is more of a risk. We are hoping people will get behind us with this, our largest fundraising challenge and, as ever, are hugely grateful for every penny donated.

‘We are so grateful to little Rosie for taking on this challenge for us – it is so thoughtful of her.’

The family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Sid for medical treatments and healthcare services not freely available to them through the NHS and social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Sid’s benefit from having the support, tools and resources to fundraise effectively as well as access to gift aid, corporate support while also providing donor reassurance.

Tree of Hope CEO Becky Andrew said: ‘We’re really pleased to be supporting Sidney’s family as they raise funds for the home adaptations he needs.’

To sponsor Rosie or to donate to Sid’s house adaptation fund visit or https://www.justgiving.com/page/nick-ioannou-1778870035816?utm_medium=FR&utm_source=CL

https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-build-sid-a-safe-space-at-home/